In 2010, Tilman Blakey heard the dreaded words that tens of thousands hear each year — “you have Parkinson’s Disease.” The news, obviously, came as a shock and hit hard.
While it can often be linked to genetics, Blakely says he didn’t have that connection.
“As far as I know, I’m the only one in my family blessed with this,” he said with a laugh.
That’s certainly not uncommon. In addition to genetics, environmental factors and aging can be linked to the disease but most cases are idiopathic, meaning that there is no clear cause. Instead, the neurological disorder can be attributed to a combination of factors, but some never pinpoint the reason behind their diagnosis.
However, there is a series of neurological events that take place in all Parkinson’s cases. According to the Parkinson’s Foundation, the condition causes an impairment in cells that create dopamine, a chemical messenger or neurotransmitter that’s primarily responsible for controlling movement, emotional responses and the ability to feel pleasure and pain. As the condition progresses, more cells die and eventually the brain stops producing significant amounts of dopamine altogether.
The symptoms can be wide ranging. While many associate the condition with tremors, that’s not always the case. As a “movement disorder,” there’s often a stiffening of the limbs of the body, as well as Bradykinesia, the slowing of movement. But there is no clearly defined set of symptoms that hold true for all patients.
“Some people experience certain symptoms and others don’t,” Blakley said.
One thing that has helped all Parkinson’s patients is gaining information. To do that, connecting with others who also have the condition has proved invaluable. That’s why Blakely along with Mike McKinney decided to form a local support group for those with Parkinson’s, their families and caregivers.
“I think there’s a lot of misinformation out there about it. One thing is that it’s a mostly male disease. But that’s not what the statistics show. It can be both genders,” McKinney said. “It’s an ‘across the board disease,’ so this support group will be for those with Parkinson’s, their caregivers, their husbands or their wives and families.”
The group will host its first organizational meeting at 11 a.m. Dec. 2 in the parlor of St. Simons United Methodist Church, 624 Ocean Blvd., St. Simons Island.
“We wanted to get together and exchange information. It’s helpful to know what others are experiencing and what’s working for them. Since it is slightly different for everyone, I may have something that other people don’t experience. But it’s really good stick your head up out of the sand and talk to others about it,” Blakely said.
“There are a lot of new promising treatments coming out, so it’s good to hear about what’s working for other people. That could be how they’re handling their medication or exercises that they’re doing. It gives you something to think about and discuss with your neurologist, which is definitely something that you want to do before you change anything.”
This first meeting will allow those interested to connect and lay the foundation for the support group.
“We hope to come away from this meeting with an organizational plan that will benefit Parkinson’s patients, caregivers and family members who are affected. We want to encourage everyone to come to the meeting. It will be a support group for people with Parkinson’s by people who are living with it,” Blakely said.
For questions or more information, Blakely asks to be reached by email at firstname.lastname@example.org.